My apologies on the delay in a reply, I only just saw your message today. I am sorry I won't be more informative to you. Honestly, you are the first I've spoken to with this diagnosis. I have gone through 3 rounds of IVig, 6 months each. I did not respond to treatment. I am told I am one of the first with no improvement.Apparently for most there is either a halting of progression or even up to 30% recovery. This was my understanding years ago, things could be different now that the condition is becoming recognized world wide.
Both of my arms are affected, I have lost most use in my right. I hate to tell you that most of my arm muscles are afflicted. I have recently noticed a "funny" feeling in my feet and am scheduled for testing in a couple weeks.
How are you finding the treatments?
I found I felt sick from it for a day or 2.
I am curious to know if it helps you, this is a frustrating and scary thing. I think the odds are in your favor it may help.
Best of luck!
Quote:
Originally Posted by elunow
Wow! After waiting many months, finally someone answered my thread. I was beginning to wonder if I was the only one out there with this condition. I'm interested in learning more about this condition, to find out the best way to treat it, and what are reasonable expectations regarding the outcome of the treatment.
I've started taking IVIg, and have had two sets of infusions. A month after the third infusion, I'll have a set of neurological tests to determineif I am responding. Right now, it is too soon to say anything about the results of the IVIg; I understand it takes many months for nerves to heal.
What parts of your body are affected MAMA?
Have you tried any treatments? If so, what was successful?
And what has been your experience about progression if left untreated?
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